1. < MAC & Bronchiectasis

Symptoms of tingly arms, hands, feet and calves

Posted by lmh7 @lmh7, Jun 10, 2018

I'm wondering if anyone has experienced these symptoms caused by either MAC or the Big 3 antibiotics; tingling achy arms, hands, feet and calves with feet being slightly swollen and painful when first standing. My doctor discontinued the 3 antibiotics one month ago after being on them for 14 months, as I was experiencing flu-like nausea, chills and sweating, which started shortly before discontinuing the antibiotics. Now after a month I'm still having all of these symptoms. Are there any perscriptions for nausea that have worked for any of you? It's hard to be at work while feeling so crummy. I'm almost more worried about the tingly sensation going on now. Thank you for your help!

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lmh7 | @lmh7 | Jun 27, 2018
In reply to @lmh7 "Well here it is 4 months later after I first posted asking about symptoms of MAC...." + (show)
@lmh7

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

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Hello @windwalker: So far I have not been doing any nebulized saline treatments so will ask my doctor about that. After first being diagnosed in March 2017, I asked my Mayo doctor about how to avoid reinfection. He said "Just avoid indoor hottubs and don't worry about it as there is no way to avoid it". When I became sick with MAC symptoms again after a year while still on the 3 antibiotics, I learned by way of scouring the web that there are many ways to avoid the bacteria. I am very discouraged that he didn't tell me the facts so I could have helped myself. I am now doing everything recommended to avoid it. Also, I am wondering what a suseptibility test is that you mentioned? Is it possibly a list of drugs that will work with the strain I am infected with? I am now waiting for the bronchoscopy results to come back so maybe it will come along with it?

REPLY
Jo Ann K | @jkiemen | Jun 27, 2018

@kmh7 I think the Doctor has to order culture and sensitivity testing. The cultures take a long time to come back. Weeks. Ask where they are sending it. I think they tell me the best place is National Jewish for sensitivity testing. I am sure there are other places also. He should tell you which bacteria type you have.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 29, 2018
In reply to @lmh7 "Well here it is 4 months later after I first posted asking about symptoms of MAC...." + (show)
@lmh7

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

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@lmh7, I feel certain that a suseptibility test was automatically done with your lab test, especially if it were done at the Mayo. You can call and request a hard cipy of your lab tests from the sputem test along with the suseptibility test. That is a test to see which antibiotics will and will not work to treat it. Each and every one of us should have these hard copies in our possession; in our own file.

REPLY
lmh7 | @lmh7 | Jul 3, 2018
In reply to @lmh7 "Well here it is 4 months later after I first posted asking about symptoms of MAC...." + (show)
@lmh7

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

Jump to this post

@windwalker, @jkiemen, Yes they are doing a suseptibility test and I am waiting for it to come back. I am actually just as concerned now with the neuropathy that I am having in my feet and hands. I assume it was caused by the ethambutol. I quit taking it 2 months ago and the neuropathy seems to be getting worse. Has anyone had this happen? If so, has anyone had it go away in time?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 2018
In reply to @lmh7 "Well here it is 4 months later after I first posted asking about symptoms of MAC...." + (show)
@lmh7

Well here it is 4 months later after I first posted asking about symptoms of MAC. It turns out that my returning symptoms while being on the Big 3 antibiotics is being caused by reinfection of MAC and not the antibiotics. I was on them for 14 months when I began to get sick again. I just returned from the Mayo Clinic where I had another CT and a bronchoscopy (I do not cough so have no sputum to test). The preliminary test came back positive for Mycobacterium. Now I need to wait 4-8 weeks to see which strain it is to decide which meds to try next. I felt great on the antibiotics with no symptoms at all so was pretty confident I was being healed. Now I am back to having the usual MAC symptoms of nausea, stiff muscles, hot, headache and a new one this time; tingly/burning hands and feet. Have any of you had luck with treating any of these symptoms with either OTC or prescribed medications? I've tried Aleve, Tylenol, Zantac and Zofran with no relief at all. I feel like I have the flu every day. I would be grateful for all recommendations you might have!

Jump to this post

@lmh7 Per your statement that the dr never told you how to avoid re-infection.....as great as I think my dr is, he never mentioned those things either. He was solely concentrating on how to treat it. Being the researcher at heart that I am; I had looked up all that I could find to learn about my disease, and so that is how I learned what to do. Then joining this support group here also contributed to learning more. Moral of the story is: We must be our own best advicates!

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